Skepticism

EVENTS

Autism blog poll

You’ve seen this phenomenon before: some flaky point of view wraps itself up in one of the trio of disguises, god, country, or family, and uses that to excuse stupidity. Here’s a case in point: a blog called “Thinking Mom’s Revolution”, in which the first word is a complete lie. It endorses homeopathy and chelation therapy for autism, which is, of course, caused by vaccination. But Motherhood! How can you question a mom?

Right now, that blog is the top candidate in a competition for the top blog about autism. This must not happen. The second runner-up (and it’s very close), is the Thinking Person’s Guide to Autism, in which the first word is not a lie, and which promotes an honest science-based approach to the issues.

Regarding Caroline is full of anti science claptrap too, so don’t vote for it in an effort to push down the Thinking Moms.

Emma’s hope doesn’t appear to embrace quackery, but it does have some strong themes that disappoint and frustrate me as another parent of an autistic child.

She keeps talking about how beautiful and incredible this world she now lives in is and how she wouldn’t trade it for anything. That is such horrendous bullshit. I appreciate that she has a new sense of perspective, but there is nothing I would not do to give my daughter a typical life.

Maybe it’s different if your autistic kid is high functioning and can talk, but I can’t think of anything more selfish than being glad your child has a disability because it helps you see things in a different light.

Maybe it’s different if your autistic kid is high functioning and can talk, but I can’t think of anything more selfish than being glad your child has a disability because it helps you see things in a different light.

As someone with various relatives who have ASDs, and as someone who may have one myself: Agreed, so damn hard.

The “social model of disability” needs to fucking die already. I’m all for better accommodations for people who’d rather have those than a cure, but don’t tell me that all disorders, diseases, and other impairments are inherently value-neutral except for how society regards them. I can tell you point blank that being so severely depressed I could barely care for myself would not have been a better experience if there had been no stigma whatsoever.

And as for the mental wankery of, “But if you had two legs and everybody else on earth had wheels, they’d consider you disabled!” — yeah, and if frogs had wheels, they wouldn’t bump their asses when they hopped.

@Raven: yeah, It’s sad, but there are still a lot of jerks out there trying to “cure” their “poisoned, toxic” children. I love TPGTA. Shannon Rosa, one of the founders, has a great blog in which she documents her travel from the “my child is vaccine damaged” to acceptance of autism being the developmental delay that is it.

I have read Kassiane’s blog for years. She’s an amazing person, too.

TMR is a dangerous place.

@PZ: thanks for posting this. I had meant to go vote, but can’t access Babble from work, where I first read about the contest, and then forgot in the chaos of settling back after vacation.

It has nothing at all to do with endorsing people who actually support facts over people who spread unfounded unscientific lies that can actually be dangerous. It has nothing at all to do with the actual danger of not vaccinating or sending kids for Chellation Therapy.

Autism as a strongly genetic disorder: evidence from a British twin …
ww.ncbi.nlm.nih.gov/pubmed/7792363

by A Bailey – 1995 – Cited by 1518 – Related articles
Two previous epidemiological studies of autistic twins suggested that autism was predominantly genetically determined, although the findings with regard to a …

I’ll add here before the crackpots show up, that we’ve known what causes autism for a long time now.

It has a strong genetic component.

The current model is hundreds of genes with small effects and certain combinations of those resulting in autism spectrum conditions.

Chelation therapy can be used to treat heavy metal poisoning, but there are not many places that have the staff qualified to do it. Here in the UK I suspect it is only one or two, and probably only one for kids.

And along a not too different line, examine closely the ads for “Cancer Treatment Centers of America”. It you look closely you will observe (in at least one of their spots) that they offer “State of the Art radio-therapy” combined with Naturopathy.

It has nothing at all to do with endorsing people who actually support facts over people who spread unfounded unscientific lies that can actually be dangerous. It has nothing at all to do with the actual danger of not vaccinating or sending kids for Chellation Therapy.

That’s what we want, to crush all resistance.

You misunderstood me (and mistook me for someone who hasn’t been a regular at this blog for five or six years and understands Pharyngulating polls about as well as anyone here).

If we didn’t live in a society that practically shoves a trophy up your ass for being ‘entitled to your opinion’, we wouldn’t have so much work to do promoting well-founded ones over idiocy. We wouldn’t be just another loud voice in a sea of loud voices.

Yes, it’s great to promote facts and science and all that sort of stuff. But the public doesn’t know the difference. So, let’s say we win. Our side gets more exposure, and the idiots get less. We’ve removed a pressing threat, but we won’t change very many minds, if any. Nobody’s going to link through “Top Blog on Autism”, find the “Thinking Person’s Guide to Autism” as opposed to the “Thinking Mom’s Revolution”, read it and all of a sudden understand science and evidence-based thinking. The idiots won’t learn to separate scientific reasoning from spurious. They’ll still listen to snake oil peddlars. They’ll still get chelated. They’ll still vote for religious racists and assholes and anti-science fuckwits.

Really, I work in public health, and I know first hand just how ineffective education campaigns are in changing people’s behaviour. Not that they don’t have an effect: slowly they change attitudes that allow for truly effective measures such as legislation (cf public smoking bans and higher taxes on tobacco products and their effect on smoking rates), but fuck: the fact that several anti-science blogs in the running for this award should tell you all you need to know about just how much of a difference having a science-based blog win a “Top Blog” award will make.

If you’re really about saving lives, then without a doubt, crushing all resistance would be a much more effective strategy.

I was tempted to vote for the cannabis blog, too, but I gotta be honest: I’m sick of all of the goddamned woo surrounding weed. I’m all for legalization (or at the very least, decriminalization), but it’s not a cure-all, people.

As a society, we really need to stop encouraging people to have opinions, and moreover to share them.

I suspect that this ultimately flows from that ditzoid Shirley MacLaine, Ground Zero for the idea that my reality is as true as your reality.

But may I point out that while your sentiment is A-okay, your expression of it is somewhat lacking? Better to say “we need to encourage people to make sure their opinions are well informed, particularly by fact and science, rather than fantasy. lies, and quackery, before they share them.” Accentuate the positive, you might say.

I believe that the grifters of quackery and falsehood will exploit any negativism to their (financial) advantage, hence “encouraging truth” plays better than “discouraging lies”.

To P-zed, kudos. If you have saved even one concerned parent of an autistic child from falling into the grip of the liars, quacks, and frauds, you have done good.

Sorry for the buzzkill, but these fucking douchenozzles are on track to win on Monday, and they’re going to fuck up healthcare here if they can ram through their two-tier bullshit, and as a result, people will die. It’s happened before. I’ve worked in the system long enough to remember how it goes.

So, freedom of speech, rah-rah-rah, and all that shit, but remember that, while it’s a morally better to endorse everyone’s right to be a loudmouth fucking idiot, the cost in lives is not zero.

Whether or not it’s less than sending malicious idiots to languish in gulags for speaking their what-passes-for-minds, I don’t know. It probably is. But it is not zero.

But may I point out that while your sentiment is A-okay, your expression of it is somewhat lacking? Better to say “we need to encourage people to make sure their opinions are well informed, particularly by fact and science, rather than fantasy. lies, and quackery, before they share them.” Accentuate the positive, you might say.

Sure. I could say whatever the fuck I want. “All hail the giraffe King, with pretty flowers on top.”

It won’t make a goddamn lick of difference. The morons will still be morons. Positivity doesn’t. do. squat.

Like most people, my default mode in any interaction with parents with autistic children is empathy but when said parent turns out to be a “Mum’s totally unfounded instincts and wishful thinking knows best because mothers have special, other ways of knowing” type, I just want to hit them upside the head with a +5 Warhammer of Reason.

Then when I get over being pissed off by the ignorant hubris of it all I get back to thinking of the poor child and feel sad about how badly he/she must be served by a fantasist parent.

“we need to encourage people to make sure their opinions are well informed, particularly by fact and science, rather than fantasy. lies, and quackery,not drink before they share themoperate motor vehicles.”

While I drafted my reply to Brownnian’s first post, she (he?) posted another that I didn’t take into account.

What she has to say has a corollary: it’s an uphill battle against the quacks. They offer distraught parents certainty, whereas the non-quacks, like all good factualists, cannot offer certainty. The quack says “this will cure your child”, while the non-quack, out of perhaps an excess of intellectual honesty, says “this may help your child.”

People like certainty and dislike uncertainty. The masses are big on painting life in black and white.

The missing element here is that the very people who should be cracking down on quackery, the FDA and its congeners, are crippled by legislative allies of the quacks. The situation is aggravated by the widely held view that the AMA, which should be a bastion of truth, is far too often also motivated, just like the quacks, by filthy lucre.

Perhaps a first step is disseminating the meme “freedom of speech does not extend to lies and falsehood, whether held sincerely or not.”

It’s true that not all of the pain caused by disabilities is due to society’s privileging of able people (that bout of arthritis? it would have been pretty shitty in any society, what with the unbearable pain), but some of it is. And most of the people who use the social model of disability are aware of that. Things like sensory integration issues – which lead to a lot of the suffering experienced by people with autism – could in fact be reduced if we had an eye toward doing so, but our society is set up for people who have a “normal” level of tolerance (despite the fact that a lot of neurotypicals find overloads unpleasant too). Things like stimming, which a lot of people are extremely uncomfortable about their children doing, are often completely value-neutral but just “look weird,” which as far as I’m concerned is not the autistic people’s problem. (This is not to say that the parents are wrong to be uncomfortable – people will treat their children like shit because of “looking weird.” But the shitty treatment – including from well-meaning people working to “help” them – is what’s causing the pain. See also Quiet Hands.) Same with a lot of communication issues and interpersonal issues. Able people are treated as the default human, when in fact that really doesn’t help anybody. Because of that, a lot of impairments are difficult to admit to and difficult to live with despite the fact that they are extremely widespread (think how many people have bad knees, and how often they have to go up and down stairs). And personally, I think self-advocates are the ones we should be trusting most on this. One person’s experience of disability does not invalidate another’s (like, of course Daisy’s wanting to have her depression treated is valid), but for goodness’ sake, trust people about their own lives and needs. I would maybe have a better life if I were not mildly impacted by autism, but I’d also probably have a better life if I were not female, and nobody’s probably going to try to cure that. In my ideal world, I’d still be both, but I’d have the anxiety under control (good place for treatment/cure), there would be more sensory-friendly options, people would understand that there are different ways of communicating and emoting and be educated about how they work, and … people would communicate with me honestly, literally, and preferably in writing. Also, a lot less stairs. And, you know, no patriarchy and all that.

Brownian is right, y’all. This naive assumption that simply leading horses to educational water (in a postive, upbeat and Affirming™! way) will solve any problems is ridiculous. You have to have had your eyes closed for your entire lives not to see this. It’s the same phenomenon at work with civil rights, gay rights, and other important issues. You can’t just encourage people to make rational decisions. That does not work, if by work you mean “make a substantial difference in the opinions and actions of millions of people.” You know, effective.

There have to be negative penalties to carrying on stupid beliefs and activities that harm other people. It has to hurt. Whether it’s regulation or social shaming (yes, shaming) there has to be a cost, not just an “opportunity.” Loudly calling out bigots and making them shame-faced to say what they say in public works. Being nice does not. Translated to the autism situation, there needs to be some kind of equivalent negative cost to being a woo-factory.

Generally, I do. That said, my young autistic cousin sure as hell didn’t seem happy when he was very little, screaming well into the night, every night. It didn’t seem to have much to do with societal expectations. And then there are the PwD who don’t accept the social model and have been told that they have “internalized ableism.”

I’d like to add that while of course the experiences of people with condition x should be centered in such discussions, I really wish some disability activists didn’t dismiss the needs of caretakers so blithely, often with the implication that caretakers are oppressors. They are disproportionately women, of color, and poor; their work is undervalued, underpaid, and yet criticized harshly when perceived as imperfect. If we want optimal care for the disabled, caring for caretakers has to be a part of it.

I am with you on the issue of sensory stimulation. I’m pretty sensitive to noise, and I am unable to think too deeply or carry on much of a conversation with music playing in the background. The world seems geared toward people who find themselves chronically understimulated. I wish there were more social space for silence and introspection. Even libraries have been taken over of late by the sort who thinks that everything which caters even partly to children must permit any sort of behavior.

Josh:

There have to be negative penalties to carrying on stupid beliefs and activities that harm other people. It has to hurt. Whether it’s regulation or social shaming (yes, shaming) there has to be a cost, not just an “opportunity.”

I am all for this. The value of shame depends on what is being shamed.

The world seems geared toward people who find themselves chronically understimulated.

It’s not geared for understimulated people. (I doubt there are very many understimulated urbanites at all.) The world is geared to make you a consumer in spite of yourself. Urbanites are overstimulated as a rule, and unconsciously block out stimulation. Advertisers try whatever they can to overcome these blocks. Billboard, neon lights, loud music: all of it is tailored to overcome your sensory resistance. PAY ATTENTION TO THIS MESSAGE!

Brownian, good point in re advertising, but — and I’m sure the mass media has a big hand in this — a lot of people just seem uncomfortable dealing with silence. They’ve got to have their “tunes” playing, they’ve got to have the TV on, they’ve got to blither about the first thing that pops into their minds. Small talk isn’t all bad, nor is music, but not every wall has to be plastered with aural wallpaper.

She keeps talking about how beautiful and incredible this world she now lives in is and how she wouldn’t trade it for anything. That is such horrendous bullshit. I appreciate that she has a new sense of perspective, but there is nothing I would not do to give my daughter a typical life.

I think her position may be partly in (over-)reaction to a number of other parents with autistic children saying things on the line of
“my child is damaged goods” / “my life has been stolen” (yes, the parent’s life, not the child’s) / “my child would be better off dead”
The opposite sides of the same coin? Denial on one side, rejection on the other side.

However, I think I would prefer my mom accepting me as I am – and she is, however hard I try :-) – rather than wishing me dead.
Actually, I have a sister with development delay, and for my parents, it has been often difficult to stay on the middle ground instead of going for the denial/rejection extremes.

I can see how the blogger’s opinion you are quoting could be rubbing people the wrong way.

a lot of people just seem uncomfortable dealing with silence. They’ve got to have their “tunes” playing, they’ve got to have the TV on, they’ve got to blither about the first thing that pops into their minds.

Sure. And I’m one of those, generally (I have a sensitivity to loud music and TV, as they were tools my abusive father used to maintain his domination over the household). But how much of these tendencies are due to internal factors vs. external, do you think? How much of a priority on quiet introspection do we place as a culture? How much stillness do we teach? More importantly, how much stillness do we reward?

I maintain that the jangle-jangle of modern North American city life is a process of ratcheting: the more we’re exposed to, the more we find ourselves lost and uncomfortable without it, and the more that the media needs to overcome our defences, and so on.

Again, we’re talking about reality vs. some Platonic ideal of humanity. The reality is that quiet, nature-loving people are not some default. Raise people in serene, rustic settings, and in general you’ll end up with a population comfortable in serene, rustic settings. Raise that same group of people in an environment of constant bombardment, and you’ll end up with a population comfortable with constant sensory stimulation. Of course, in these case, given a diverse enough genetic base, you’ll end up with a variety of individuals with a variety of comfort levels, but some measure of central tendency around those comfort levels will track the levels of ambient exposure.

I dunno. I admit this is a lot of speculation on my part. Maybe I’m wrong.

No, I more or less agree with you. The value placed on silence seems highly culturally mediated. I think there’s some variation in personality as well, though; I doubt that everybody lamenting the noisiness of modern Western life is non-neurotypical.

Sorry Brownian. I wish I still lived in Alberta so that I could vote against the douchenozzle party, but Ralph’s Team of butchers-of-academia basically threw me out of that fair province.

Hey, you gotta live, right? Don’t stay where you’re not wanted.

Every round of healthcare cuts, the nurses don’t. And then we pay a shitload to recruit them back when those of us in charge of figuring out how to run the place have to cobble together a system after certain politicians use their booze-addled brains to allocate personnel budgets.

Fun fact: one of my first jobs after university was as a workforce consultant identifying gaps for the government after Ralph took his hatchet to the system. I should mention that I had no experience or training in doing such things, but I also had no experience or training in consultancy at all, so I charged them a fraction of what I could have and probably should have. But it doesn’t take much to survey a bunch of administrators and ask them to identify the gaps in their departments, and put it all together, so in general, the government got a good deal.

I think there’s some variation in personality as well, though; I doubt that everybody lamenting the noisiness of modern Western life is non-neurotypical.

Oh, for sure, and I didn’t mean to imply that. I think there’s a psychological cost to all of us in having to filter out all this noise. I mean, I’m a stimulation junkie, and I get oversaturated.

My favourite pub got bought by new owners who renovated it, replacing the gross carpet with laminate flooring, and now the noise level runs from 60 to 90 dB. I’d hoped that after some time they’d recognize how unpleasant it can be (noise being the chief complaint among patrons) and hang some baffling or something, but they haven’t. I’m considering tipping off OH&S—that level of constant noise cannot be healthy for their employees, and if they were construction workers on a job site, they’d be wearing mandatory ear protection.

Thank you so much for supporting Thinking Person’s Guide to Autism. I breathed a sigh of relief this morning when I saw the numbers soar past the other blog.
Best-
Jennifer Byde Myers
Cofounder and Editor, Thinking Person’s Guide to Autism.

(also currently #21 on that list: Into the Woods (jennyalice.com) in case you want to go back and vote some more…)

@lizditz: I’ll try to go back if I get the time. Was very happy to vote for TPGTA. I didn’t know I could vote for multiple blogs. There are several I read, including I speak of dreams, Silenced, Squidilicious, etc. So now I’ll go back, review the list, and vote for my favorites!

@Brownian, et al: I can’t live *without* silence. Although I do listen to music at work, when I get home, my apartment is typically quiet – not to say I don’t have windows open, so I do hear some occasional noises, but I have no TV, no radio, nothing else on. And I enjoy the quiet. I have been known to spend all day with no noise (except the inevitable ones – cars driving by, birds, cat yowling, etc). I lived with people who had to have something on to make noise all the time, and it drove me nuts.

Triskele, I enjoy music, but I enjoy it only in two situations: when I am deliberately and purposefully listening to it, as when at a concert; or in the car, driving alone. And, on a long trip, I will periodically need to turn it off to have quiet time.

@Brownian PZ Myers and I are not related, though having done a lot of genealogy this year, I will admit that it is possible, even likely, that he and my husband are distant cousins given PZ’s English, Irish and Scot background.

Silence is nice but I never get to have it here! I use music to drown out everything else. So I am often with my hands over my ears with ear buds in them playing music turned all the way up, because everything else is TOO LOUD and I need the sound to be under control.

PZ Myers and I are not related, though having done a lot of genealogy this year, I will admit that it is possible, even likely, that he and my husband are distant cousins given PZ’s English, Irish and Scot background.

Oh, so it’s your husband, is it? And that makes it okay? Sell it to the rubes, Jennifer.

You’re probably right about the denial/rejection response. But it still chaps my nuggets to hear the near worship of her child and her situation on that blog. She’s glad things are this way. She relishes it. That’s sickening. I accept my daughter too but there’s no damn way I’m happy about what she has to deal with and what she’ll never be able to do.

I wouldn’t be surprised if Emma’s mom used to think Emma was an Indigo Child.

re post #16; It’s sometimes said by those who work in the field; “if you know one child with autism, you know one child with autism”. Indeed, some of my friends who work with autistic children use the word “autisms”. Plural. Reflects Raven’s post in 16.

Incidentally, a large study in Great Britain, published last year, found no difference in prevalence of autism spectrum disorders in adults v children (well, actually they found the rate a bit higher in adults) indicating “the lack of an association with age is consistent with there having been no increase in prevalence and with its causes being temporally constant.” This is probably not news here that the commotion about a skyrocketing ASD epidemic in children is hoo-hah.

Abstract
There is increasing evidence that autism spectrum disorders (ASDs) can arise from rare highly penetrant mutations and genomic imbalances. The rare nature of these variants, and the often differing orbits of clinical and research geneticists, can make it difficult to fully appreciate the extent to which we have made progress in understanding the genetic etiology of autism. In fact, there is a persistent view in the autism research community that there are only a modest number of autism loci known. We carried out an exhaustive review of the clinical genetics and research genetics literature in an attempt to collate all genes and recurrent genomic imbalances that have been implicated in the etiology of ASD.

We provide data on 103 disease genes and 44 genomic loci reported in subjects with ASD or autistic behavior. These genes and loci have all been causally implicated in intellectual disability, indicating that these two neurodevelopmental disorders share common genetic bases. A genetic overlap between ASD and epilepsy is also apparent in many cases.

Taken together, these findings clearly show that autism is not a single clinical entity but a behavioral manifestation of tens or perhaps hundreds of genetic and genomic disorders.

Increased recognition of the etiological heterogeneity of ASD will greatly expand the number of target genes for neurobiological investigations and thereby provide additional avenues for the development of pathway-based pharmacotherapy. Finally, the data provide strong support for high-resolution DNA microarrays as well as whole-exome and whole-genome sequencing as critical approaches for identifying the genetic causes of ASDs.

Here is a recent review on the genetics of autism.

For the tl;dr’s, summary.

1. We provide data on 103 disease genes and 44 genomic loci reported in subjects with ASD or autistic behavior.

2. Taken together, these findings clearly show that autism is not a single clinical entity but a behavioral manifestation of tens or perhaps hundreds of genetic and genomic disorders.

a friend of mine is opening a photography exhibit next Friday titled, “Back Alleys and Side Streets – Finding Beauty in the Overlooked Urban Environment”.

Aha! A chance to link to a blog I’m extremely fond of: Spike Japan. The author is extremely fond of rust and urban decay in moribund Japanese provincial towns. Lotsa pictures. Also some extremely interesting commentary on the fallout from Japan’s aging demographic. As well as popping the bubbles of journalists who write on Japan knowledgeably in spite of being profoundly ignorant about the place.

The author is a British ex-pat who lives in Tokyo and is fluent in Japanese.

Raise that same group of people in an environment of constant bombardment, and you’ll end up with a population comfortable with constant sensory stimulation.

Maybe that was the case for me, because I tend to prefer more stimulation than a lot of people. I’m not one of the types to have music on all the time (I see tons of people that literally always have one earbud in at all times – I have no idea how they do it), but otherwise I fit the bill.

I prefer to be talking to someone when I’m on public transit, for example, or at the very least reading a book (I’ve been listening to music less because I’ve found I actually like my music less, even when it’s my favorite music, when I hear it more).

Introspection has its place, but some people don’t feel the need to do it as much. Either way, it’s not entirely difficult to avoid noise and stimulation outside of big metropolises, I believe. Just don’t put on the radio in the car, don’t listen to music on the bus, lie back and look at the scenery or something. There are some situations where it’s difficult to avoid (many workplaces, I’m sure), but thinking your way through it should get results.

Thank you to anyone and everyone for voting for my blog, Autismum. I do try to keep it rational but OMG I get irate at some of the stupidity that abounds in regards to autism, vaccines and treatments especially from the “autism moms.” xx

My son has high-functioning ASD, and I’ve had a couple of people suggest a gluten and casein-free diet as a way of “curing” his ASD, or at least mitigating the symptoms. Didn’t see it mentioned in those blogs, though. I’d like to hear PZ weigh in on that. There doesn’t seem to have been much clinical research on it.

Most of my family and relations have ASDs. Very few of us have a gluten enteropathy. If your child is underweight despite eating vast quantities of food, and/or has a swollen belly and/or weird bowel motions, I would suspect food intolerance. I would suggest seeing a hospital dietician. Some gluten disorders are worst in infancy and later adulthood but can be ‘hidden’ during late childhood, adolescence and young adulthood as the person copes by eating a larger amount of food than they would otherwise need.

Having untreated food intolerances can make it hard for anyone, NT or Spectrumite, to function. Certainly, going on a gluten-free diet helped me enormously with my ability to cope with anxiety, for instance (if one thinks about it, anxiety is bound to be aggravated when one is effectively starving from lack of nutrients because of a damaged gut). I managed to put on weight as well, and after nearly 20 years on the diet I am in the middle of the ‘ideal’ BMI range, having been hitherto severely underweight my entire life. I was diagnosed gluten intolerant in my mid-thirties, Number 2 Son and Number 3 Son as babies; but they insisted on being allowed ‘real food’ from around the age of eight. I reluctantly allowed them to go off the diet – fights over food I can do without. At the age of eighteen Number 3 Son put himself back on a GF diet and feels much more ‘well’ on it after just six months or so (although, aged 19 and just over six feet tall, he is still very underweight at around 52kg/115lb).

However, the diet made no difference whatsoever to our autism, although being well may make it seem (to other people) that we are behaving ‘less autistically’ because we now have more energy (and less anxiety) for play-acting NT. Not that we are very good at it, you understand! =^_^=